I had a neighbor come by the other day who I haven’t seen much since Hannah was diagnosed. She had been meaning to come by, but she just hadn’t had the chance. She was asking me how Hannah was doing and how we are doing with everything. I think I inadvertently downplayed the seriousness of the situation with Hannah. I said she is doing great except for her obvious big abdomen, and I shared that she starts treatment in a couple of weeks. She asked how I was doing, and I said I was doing relatively good.
The truth is that Hannah is not fine. We don’t know what is going on with her. We don’t know what type of Gaucher’s disease she has. We don’t know if her Gaucher’s disease is going to take her life before she even gets to be 21. We don’t know if she is going to develop antibodies to the Cerezyme treatment because her GD is so severe that she doesn’t have any enzyme production, and her body may fight against the Cerezyme. We don’t know if her minor developmental delays are just related to being born a month early or perhaps may be a sign of GD. Hannah is going to have to go through hell for the next few months with the treatments not to mention the possible port surgery and the multitude of doctors visits.
Am I really doing good? I am holding my own. I’m scared to death for Hannah, and I am stressed out. I’m extremely worried about all three of our kids, and how this situation is going to affect (and has already affected) Little Girl A and Big Boy E. I know I need to get them back into a normal life with extracurricular activities (her dance, him soccer), but I just don’t have the energy or the set schedule. Having three kids is a hell of an adjustment.
I’m worried about money — our savings is still dwindling, and I still don’t have an income yet, and I don’t know what we are going to do if I don’t start bringing in SOMETHING in the next few months. Even with insurance coverage, we are still going to have to come up with about $1000 a month just for medical expenses that insurance DOES cover. What about the things insurance may not cover? I’m worried about next year’s insurance coverage, as even though coverage is good with Daddy’s company this year, they can make changes once the policy comes up for renewal. Hannah’s Cerezyme will be even more expensive because she will be bigger.
We don’t want sympathy. I think Daddy and I downplay the situation to friends and his coworkers because we don’t want any sympathy. But there is a part of me that thinks it is a mistake to downplay it when people ask as well … I’m not sure why I feel this way, as if we may be missing out on something. It is hard to explain…if I understood why I felt that way, I would know what to say.
The thing is I do want help from people, but I also want people to want to help. But I’m afraid to approach people for help for fear of being turned down or being brushed off. Self-esteem crash time, I guess. But at the same time, it is hard to ask for help for something that you really don’t know what type of help you need. I don’t even know where to start figuring out what I need help with.
I wish there was a manual on how to deal with this type of situation.
This may be totally out there but I have noticed on our local news that they sometimes feature families with children who have special situations like yours. Is it possible that you could call and have them do a feature on you, so you can raise awareness for the condition, and then maybe you could set up some time of fund for viewer donations to help offset your medical costs?
I know it may not be something you want to do, but it did pop in my head. 🙂
i wish i had the manual to give to you. you and hannah will be in my thoughts and prayers – sending you hugs and supportive energy 🙂
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Sending you hugs
Tons of hugs to you and Hannah!! I wish there was a manual for you also!
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I really know what you mean about asking for help, but we don’t need you burning out. I know this may be hard, but I think you should go back to your neighbor and have an honest talk with her. If she isn’t someone you feel like you can open up to then approach whoever it is you feel you want to talk to. Tell them what you just told us. You are going to need to open up your circle and reveal to people what’s really going on and what you need. (I should probably take my own advice.)
When people ask “what do you need?” I am always at a lost too because I think: “what don’t I need?” Try not to worry about whether they’ll be sympathetic because those who are supposed to help will be right there with you and those who aren’t will be gone.
Try this: The next person who you want or feel you can ask for help, say something like ‘I’d like to have my other children have as “normal” a life as possible and participate in some of the activities they love. Do you think you’d be able to take them to practice or pick them up?’ Or something similar.
You have a lot on your plate and the worry of money and Hannah’s illness are so stressful. Take care, okay?
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I have been where you are. I can help you talk it out and give advice for the medical cost. Prayers with you and your family.